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Going Underground and True Choice

[This is the twelfth post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. For further context, please see the introductory post in the series, which can be found here; we’ll string together all posts in this series when we have most / all of them up, or you can search by the category “Modern Pursuit” to get those already posted.]

Here Anna Macquarrie from the CACL talks more openly about the history of eugenics and contemporary genetic testing. In Part 2, below the fold, there is some discussion of this, with Simo Vehmas resisting the linkage of eugenics with contemporary attitudes and practices, and some hearty discussion following from all–not everything can be heard here, but we’ve put what we could make out on the transcripts beneath the fold.

Is making the connection between past eugenic practices and contemporary practices, such as genetic testing for Down Syndrome, “playing the Nazi card”, as Simo suggests?

Going Underground and True Choice: Part 1

Note that there is no sound in the first 30-40 seconds of Part 1, which simply contains the title of the clip, the name of the speaker(s), and the location of the symposium, information that is provided in the beginning of this post.

Going Underground and True Choice: Part 2

Transcript for both clips below. If you have trouble loading the clips above, you can try directly from Youtube: Part 1 and Part 2.

Transcript for Part 1:

Anna: I think one of the questions is really, in response to Simo, I think it’s pretty horrible here in Canada. I think part of me really wonders, are they really that different around the world? And in ways I would love to say that I sat here shocked at Wendy’s story, but I think that’s a really common story everywhere genetic testing is available and whether or not the I think, Sam, you talked about the kind of explicit and the covert and I think when we looked back on the eugenics movement it seems like it was a really explicit thing, and I think that it seemed very clear at the time that that’s the intent and what was going on and now we’ve kind of hidden our stripes a little bit and gone a lot more underground in terms of what we’re trying to accomplish with the genetic testing. And I mean all the language that goes around with the testing. It’s “screening”, it’s trying to find out who’s at risk. It clearly sets out, it’s entire purpose is to identify that which is undesirable, and it sets into motion a number of steps that fall from that very starting point. And so I think that there are some real challenges that we need to look at, that this isn’t an individual story, this isn’t, I don’t think this is an individual story and in one particular country, I think there is a much bigger systemic issue that’s going on here, but the challenge I think with having it go so underground and having it be around information and people having choice, but that choice gets manipulated, and we end up having situations where we don’t have a forum for people to really get together and have this discussion. When we know that upwards of 95% of people are terminating pregnancies on the basis of Down Syndrome, on the basis of trisomy-21, I mean it’s something like 99% in cases of hydroencephalitis. Like it’s, there are some pretty shocking statistics, and it can’t be without reason. There’s clearly some direction that is guiding that, but we don’t have a framework that’s allowing a questioning of that. We’ve got a publicly funded system that has no public accountability, because in ways I think we’re scared to have that discussion. We don’t want to be seen as anti-abortion. My personal opinion, I am okay with being pro-choice, but the issue is looking at how do we ensure that people have choice that’s a true choice, that they’re not being manipulated into making a choice, that they’re not starting from a point where people are so devalued that they can’t see that that would actually be an option in their life, so that the selective abortion issue for me is actually, it gets into that bigger issue of where the discussion is starting from and how people can actually be making those choices. And just really like trying to figure out how we can take away this isolation when we know we’ve got doctors saying “I’ve never had anyone in my practice carry to term a pregnancy where disability has been ‘detected’”. So there’s a story, there’s a dialogue that needs to be happening there and we don’t have that public accountability, we don’t have that public platform to really question that, what is going on. You know and we hear the experience of families in hospitals and families day to day living lives where they’re actively being devalued. We can’t be shocked that this devaluation is happening prenatally and there really are seek and destroy missions that are going and we need to find that public space to really open up that discussion and have that more broadly within our medical system, within our communities, and not just amongst the disability community, but really try to pull that as broadly as possible. Because I think that we allow people to feel like it’s their one story, it’s their one experience. You know, your experience with your daughter at the hospital, we hear from families all the time that they’re having that, and when we say to them “we’ve just heard a similar story” they’re shocked. They think “oh my God, this is happening in other places?” They feel isolated, they don’t feel they can talk to anyone about this, and it just continues to be kept under the surface, under wraps in this sort of hidden eugenic culture that no one is pulling out into the public to question. And we say that it’s about individual choice and it’s about individuals doing personal private decisions, but those private personal decisions have massive public consequences, and we have to find a way of not stripping people’s rights, not stripping people’s autonomy, but still being able to find out what is going on. And, in Canada, we actually don’t collect that data. You can walk in and have an abortion, you don’t have to say why you’re having an abortion, and I think that we do need to be looking at, what are the mechanisms that we have in place that are not stripping people’s rights, that are not violating people’s rights, but still letting us have a broader dialogue to let us get at what is driving this, what values are here, and really to pull it out and say, “are we basically hiding a new eugenic movement?”, because I think that increasingly as parents come forward, as people talk about it more, we find out that this is happening everyday, in every city, around the world.

Transcript for Part 2

Simo Vehmas: First of all, eugenics was about thinking about the well-being of the race and the state, and it was about getting rid of people who were considered as morally insane and financially consuming, so it was about the well-being state and the race. And at least, I haven’t met anybody who would say publicly at least that these present practices are about this. Present practices are about individual choices and doctors obviously most of them tend to think that they are serving people, because people do not want to have children with impairments. So it is about individual choice, it is not about uh, so I think it’s just not right to call this eugenics. It’s different to say that there are a lot of ethically problematic things going on, some practices are unethical or immoral, but it’s not the same as eugenics. I think it’s referent is not…

Sam: But they can be damaging. Maybe if we didn’t have “eugenics”, maybe if we had another word, this audience would be more filled.

Rob Wilson: So you think the sort of back-door eugenics. … eugenics coming in the back-door through choice, which is what Anna is referring to, you just think that doesn’t make any sense?

Anna Macquarrie: I mean, it’s hidden by individual choice, right? I think that what I’m trying to say is that there is that broader piece of ‘it’s better for a community if we don’t have disability’ and I think that that is the message people are trying to get across.

Simo: If that’s the case, maybe so. That sounds alarming, I hadn’t heard that, I hadn’t had that impression that it’s about our societies and our communities that would be better off without disabled people.

Audience member: It’s impossible to believe.

Panel member: You have to suspend your disbelief for a second.

Anna: I can’t believe you haven’t heard that…

Simo: Yes, I have heard that, but it’s a really marginal viewpoint. That’s considered as really extreme, right-wing, politicians might. But I haven’t, any politician in Finland wouldn’t say that aloud.

Audience member: The government of Saskatchewan has a centre for the prevention of birth defects that specifically targets Down Syndrome and it has the stated goal of eliminating Down Syndrome. That’s the government of Saskatchewan.

Simo: I hadn’t heard that.

Dick: I think there’s two dimensions to the issues here. One dimension actually is a definitional question and I don’t want to get too wrapped up in this except to say that it makes the argument more difficult. It, the actual sort of strict definition of eugenics is that you’re making a change in a sense in the gene pool. And so that you believe that disability is primarily carried by heredity and that you’re doing something to break that chain of heredity. And the reason I’m saying this, it’s not because I think it’s important that we use that definition, but most of the people we might be arguing with are using that definition. In that definition, getting rid of Down Syndrome is not eugenic.

Audience member: See the existence of a test that serves to eliminate them from a given family as problematic. There is no two ways about that.

Dick: But not many people with Down Syndrome have children with Down Syndrome, is what I’m saying. But I’m not telling you that makes it ok.

Audience member: … The captain of the submarine and the assistant captain of the submarine are arguing “is the water coming in or the air going out?” At the end of the day it’s…

Sam Sansalone: The semantics though, are important. I think you made a point that is very compelling, because if there’s any chance that we’re using the wrong terminology here, even if it’s the right concept, we could be deflating our cause, if it’s just going to be greeted with a sense of… So I’d be curious to know how you would propose articulating this problem, this crime.

Simo: Well, because I mean in bioethics, I’m talking now about philosophical bioethics, that there’s a logical flaw called playing the Nazi card, which is exactly this. Like I said, I don’t know what’s the reality in Canada. But, from a Finnish perspective, from a European perspective, there is no eugenic movement I mean at least officially, government.

Sam: Is there another movement, though, that would be articulated differently?

Simo: There is a movement that is very ethically wrong, problematic.

Sam: Is there a label for it, though? I would be very interested to hear it. A word, a term, a phrase?

Simo: I don’t know if there’s a phrase. I’d rather pinpoint what is ethically wrong in a certain practice. That’s helpful. Labels and terms are not really…

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2 thoughts on “Going Underground and True Choice”

Whoa! There’s so much in Anna Macquarrie’s talk that begs for a response. I could argue about her statistics (I haven’t seen anything which suggests that “upwards of 95%” of women pregnant with a Down fetus terminate the pregnancy [for two different estimates, see http://www3.interscience.wiley.com/journal/109608754/abstract?CRETRY=1&SRETRY=0 and http://www3.interscience.wiley.com.login.ezproxy.library.ualberta.ca/journal/65500197/abstract%5D); or I could comment on the oddity of describing yourself as “pro-choice” while insisting that the choices people make which you don’t like are not “true” choices, whatever those may be; but I will restrict myself to observing that Macquarrie’s rhetoric(prenatal screening as “seek and destroy missions”? “Accountability” for abortions?) is at least as skewed and inflammatory as the ableist discourse she objects to. I’m also not loving what I see as implicit woman-blaming here – after all, who are the people who are getting these screenings and choosing these abortions? In Macquarrie’s view, it seems, they’re either dupes or they’re eugenicists.

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This blog is the combined effort of a team of researchers and community members working around the world in different disciplines to address concerns around human variation, normalcy, eugenics, and enhancement.